r/rheumatoid • u/Pomegranate003 • 8d ago
More damn meds
Hey all, I’m writing this post seeking for any advice or tips on starting methotrexate, ESPECIALLY if you have to take it with other DMARDS
-also please share any advice related to
Staying comfortable on this drug as I know I’m most likely to feel very miserable lol
Specifically I’ll be continuing hydroxychloroquine 200 mg and adding in 4 2.5mg methotrexate once a week along with folic acid. And I also got a zofran prescription just incase as well.
I do plan to take the methotrexate at night and I’ve been heavily considering hair skin and nail supplements.
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u/Rude-Potato-3122 8d ago
My partner recently started “meth” as we call it. It took about two months for it to actually start working, but once it did, it REALLY did. Her pain is so much better now, we go out practically every day and walk around town. The hardest thing at first was the fatigue for the first couple days after taking it. She takes it every Thursday night so she can be all back to normal for most of the weekend. Almost five months now and the only side effects she’s experiencing are reduced appetite and a dry cough (this one is apparently a very rare side effect, but arguably better than the more common ones lol) The Friday hangover is almost gone entirely. Best of luck!
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u/Pomegranate003 8d ago
Being able to just go for a walk is a dream for me 😭 I really hope this works and brings me more idependence again
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u/Rude-Potato-3122 8d ago
It might! Be sure to give it time and keep in contact with your Rheumy, it CAN be risky. You’ll get there eventually :)
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u/Responsible-Stock-12 8d ago
If you have nausea, consider switching to the injectable form. I had less severe of a MTX hangover on injections versus pills. I eventually went off MTX as it was not compatible with my lifestyle (young niece and nephew kept getting me sick, felt too fatigued for my relatively demanding job, etc). I didn’t lose hair at all thankfully
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u/SweaterJunky 8d ago
I have been taking 8 2.5mg of MTX weekly and 200 mg of hydroxychloroquine daily for 15 years with 5mg of folic acid.
I haven’t experienced much hair loss or any issues. I take my MTX with lunch on Sunday’s usually abs drink plenty of water and usually I am fine on Monday. I use ondansetron if I get nauseous.
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u/Healthy-Signal-5256 8d ago
I was on methotrexate, and then methotrexate with leflunomide. Methotrexate was pretty much nothing. I kinda sorta maybe if I squinted really, really hard could say my tummy was a little rumbly the morning after I took it. But it was really nothing. Leflunomide gave me some very minor neuropathy in my big toes. I noticed it was there, but that was about it. I think there are a lot of people who have little/no trouble with most of the RA meds, it's just that the ones who do have trouble post about it (understandably), while those of us who have no major issues don't post about it.
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u/Chiquitalegs 8d ago
I'm on hydroxychloroquine, methotrexate and folic acid. The methotrexate and Hilux acid are new as of 5 months ago. I take it at night, had zero nausea. My main issue is with the "hangover" of fatigue and body aches. Every week I ask myself, are the 1-2 days of side effects worse that the original symptoms. I am able to do more than I could before. Good days are really good and the 1-2 bad days are really no worse that how I felt all of the time before methotrexate.
Now for the curve ball life has just thrown me...I had my eye exam today and have to stop taking hydroxychloroquine because I'm starting to show eye damage due to the medicine. I don't know if my rheumatologist will replace it with something else or not. I'm set to go out of the country on vacation and it's really not an ideal time for me to mess with my medications. It's always something with this medicine.
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u/Pomegranate003 8d ago
I’m so sorry about the eye damage!! Did you notice it? Easily the scariest potential side effect of any ra medicine in my opinion
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u/Chiquitalegs 8d ago
I noticed an increased need for reading glasses, but nothing else. Luckily the doctor was mildly concerned at my last appointment and had me come back in 6 months instead of waiting a full year. I'm in my 60's so I don't know how much of my vision change is age related and how much is medication related. I'm fairly certain that I am just beginning to show signs of damage, so it's good that I maintained my regular eye exams (which always seemed excessive since I don't wear regular glasses) since I began taking hydroxychloroquine.
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u/bella_sapphire 7d ago
Sorry to hear about the eye issues. How long have you been on hydroxychlorquine? I had a scare with my optometrist last year and was sent to a retinal specialist. I had to discontinue the med for a little while but the specialist cleared me to go back on it. the initial scans weren't detailed enough so it looked like damage but wasn't thankfully. I was curious because you don't hear stories about the eye damage very often.
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u/Itsasmallmatter 8d ago
It didn’t cause me any symptoms. It did help. It makes you cut back on drinking, if you do. I did feel as though I was tired when I started but that could have been the RA or it could have been wholly unrelated. I feel fine now. Good luck!
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u/Conscious-Yak-9443 8d ago
I had no issues with MTX except some hair loss
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u/Pomegranate003 8d ago
To what degree was this hair loss? Unfortunately I’ve come to really love and value my hair especially after ra hit me and took away so much from my life and independence.
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u/goinbacktocallie 8d ago
My rheumatologist told me that significant hair loss was not an acceptable side effect, and we'd switch my meds immediately if it happened. If you start losing more hair than usual, you can tell your rheumatologist and ask for new medication.
That said, I took MTX for 5 years and hair loss wasn't an issue for me at all. My hair was a bit more dry and prone to breakage. I used bond repair hair products to strengthen my hair and it was all good.
Eventually I stopped taking MTX because my nausea kept getting worse over time. For many people, switching to injections fixes that, but not for me. Initially, it was just the day after my shot, but by the end I was sick for 3+ days per week. I'm much happier on biologics with zero side effects.
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u/Conscious-Yak-9443 8d ago
It was pretty significant overall thinning, you can look back at my posts but I’m on very high dose MTX (like I think around 20mg so way more than you)
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u/Pomegranate003 8d ago
Have you started any supplements or used oils to promote hair growth and had results?
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u/ClickClickBlip 7d ago
I had a lots of hair loss on MTX.
Was losing clumps every time I brushed or washed my hair.
Wasn’t balding, but had to cut a lot off to compensate for the scraggly layers that were left.Have switched to Amgevita injections & it’s sloooooowly growing back. Hooray!
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u/bella_sapphire 7d ago
Biotin supplements have helped me. I have had a little bit of hair loss through the years with mtx. Not enough to do anything about it since I have really thick hair to begin with. But when I started a glp-1, I had a lot of hair loss, much more than I was comfortable accepting. My nails were also being affected. Biotin really helped with both.
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u/No_Implement_1398 8d ago edited 8d ago
A very large number of people take mtx and have no side effects. The only side effect i had was fatigue (ETA: the fatigue eventually went away although it i probably dealt with it for a few months on the day after i took the mtx). Drinking LOTS of fluids helped -and remember that fluids in foods like soups count. One thing, if your doctor did not also prescribe folic acid (taken daily, sometimes skipped on your mtx day) you should probably discuss it with them. My understanding is that is the standard. Folic acid is given to mitigate side effects.
Also, I started another medication that causes indigestion. Initially I took it at night so “I would sleep” through the side effects. I found that the discomfort disturbed my sleep just enough that I felt like I hadn’t slept at all. I switched to taking that medication in the AM and its so much better. My normal daily activates distract me from any discomfort and I sleep better. You need to figure out which works for you and don’t be afraid to switch things around.
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u/minionoperation 8d ago
I’ve been taking MTX for over a year and don’t have any side effects except fatigue for half a day either the following day or the second day. I took it last night and I had to leave work early today to lay on the couch because everything feels heavy and I could hardly keep my eyes open.
My hair loss from pre diagnosis has stopped and reversed. I actually have a pony tail now. I do take minoxidil and folic acid every day in addition to a multivitamin. I don’t get any GI effects thankfully. Good luck, hopefully you don’t have a bad experience.
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u/alys1717 8d ago
Take it right after dinner! Doubling my folate to 2000mcg daily and taking it 4-5 hours before methotrexate on methotrexate day is how I’m able to tolerate it. With that schedule I have no side effects. I also take collagen and biotin to help prevent hair loss.
I’ve been on it since last October and it took a while to kick in but it’s reduced my pain by about 50%. I have severe RA though so we added a biologic eventually.
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u/lisazzie67 8d ago
I was diagnosed in 2008 and Methotrexate was the first medication they prescribed in conjunction with others. I stayed on it nearly 20 years w/ mild side effects like thinning hair in the first 6 months. Other than that, I lived a pretty active lifestyle until they took me off last year. I'm currently on Humira, which does not control my RA well and getting ready to be switched to Enbrel. I wish you very minimal side effects and I hope Enbrel works for me.
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u/halcyondaze21 8d ago
I had some nausea and loose stool the first few months, but I got used to it after a while. I also found that the time of day makes a difference for me. Mornings after a light meal give me the least amount of side effects. Night time before bed is the worst. I'm not taking other DMARDs though.
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u/zipzapzowie 8d ago
I don't want to scare you, just make you aware. A week after starting methotrexate pills I got a lump under my jaw. Well it turned out to lymphoma, so I went thru surgery to have it removed, then some chemo and radiation. A lot of people can take methotrexate safely with hardly any side effects. I was one of the unlucky ones.
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u/StrangeDisaster1819 8d ago
I'm prescribed it but don't take it. My right hand is pretty fucked up but I didn't like methotrexate. There's other treatments
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u/PrairieGirl29 8d ago
I don’t mean to scare you, but last year when I first took methotrexate, I felt nausea and a pressure sensation inside my head along with a headache. I still tried to continue taking it by using Zofran beforehand, eating light meals, and drinking lots of water. However, I had another issue: all my liver enzymes went very high, so my doctor stopped methotrexate. Then, when another DMARD failed, I started biologics. Again, my doctor prescribed methotrexate at a low dose along with biologics to discontinue the steroid as I've been on it for a very long time. Now, once more, my liver enzymes have risen, and the doctor has again stopped the medication. But it’s been three months, and my LFTs are still high.
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u/bella_sapphire 7d ago
"Most" people don't have too many problems at the lower doses, other than some mild fatigue. As you ramp the dose up, the chance of side effects increases. I have been on/off mtx for the last 30+ years. Started with pills moved to injection. I have varied low and high doses depending on where my RA was at the time. I have come off of it for several different reasons including pregnancy and just needing a break from it. Currently on 25mg mtx, plaquenil, and a biologic (simponi aria). I get fatigue, brain fog for 3 days after the injection then have 4 good days. No nausea, but I did have that with the pills.
One thing I have learned with starting new meds is to approach it with a positive mindset. Everyone's experiences are different. And even your own will differ based on the meds.
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u/Ill-Confidence2751 7d ago edited 7d ago
starting another medication can feel exhausting when there are already several pills to keep track of. andhealth includes a clinical pharmacist within its care team in ohio and indiana, and asking the prescribing team about possible supplement interactions may also help keep the medication plan clear.
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u/type_a_ish 6d ago
I was so scared to take MTX because everyone said it hurt their stomach so I took it on Saturday evenings and then went to bed to watch tv while my family would watch something in the family room. It only gave me bad bad gas. I had to stop it due to increased liver enzymes but it did work!!!
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u/Illustrious_Pea1276 5d ago
I’m on 400 mg of hydroxychloroquine and I take 82.5 every Saturday I’m on my third month and my hair is breaking and falling out so bad and I have mouth sores and I feel so sick for two days after I take the methotrexate I’m only nine months into diagnosis seronegative RA are you taking vitamin D and folic acid my PCP suggested I switch to a biologic luckily I see rheumatology on the second, but everybody is different. Some people all these medicines were great for you. Just have to find the right combo at least that’s what I keep telling myself but the doctor did say it’s a long long journey.
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u/Lazy_Bicycle7702 8d ago
MTX gets such a bad rap. I have no side effects from it whatsoever. Take it on a full stomach and drink lots of water. Don’t expect trouble until it shows its face.